I think it is a good idea. Suicide rates are too high amongst those with EM and other painful rare illnesses. The isolation and being on fire constantly certainly make it hard to cope.
I am lucky to have good mental health support and I know it helps me. But it is restricted to scheduled appointments. If there was a line for people with rare and painful diseases, that could potentially help many isolated sufferers. The usual hotlines are not specialized towards those with rare diseases and not educated in how exactly how to best help this type of demographic.
I appreciate your efforts to help lend support. I think it would help to have people prepared to answer the hard questions, as many will probably not call a hotline unless experiencing a severe moment.
Having someone willing to listen. That is a big deal. People that actually care and lend support and also give reasons to hope. Because no matter how long we suffer with something, we cannot know how long it will be until we find things that help us cope better, or treatments that help.
As for things that help, I do not know if other people do something that I do that really helps me.
For me and my various painful and seemingly helpless conditions, it helps to imagine something that might help with my pain. Like, I a perfect world, if I had something shaped a certain way that does “X.” Then I figure out how to create the thing with fabric, elastic, cooling products, gels, pillows, etc. Then I make it. If it helps at all, I figure out how to improve, refine, and even redesign it. Eventually I get something that really helps.
The act of doing something to help myself relieves much of the helplessness. Yes, my feet are on fire, and I cannot stop it and it is relentless. But look at the set up on my bed that holds frozen water bottles inside of pillows so I can have minimal cooling all night long and more in depth cooling for a moment if I wake up feeling more severe. It’s not polished or beautiful. But it is effective and I head to bed with less despair. And look at my foam thing that keeps my idiopathic hip pain from increasing to intolerable levels. I have felt brave enough to go on road trips because of that.
My point is, I do things to try and make life less painful. I keep trying new doctors and treatments and self made creations even when I feel no real hope.
Focusing on loved ones helps as well. Volunteer work, as limited as I have been, still is possible and helps me. Even just volunteering as a text message based “listener” on 7 cups on my smartphone and helping other people from my couch… Because when you can help others, then life feels less wasted.
Having creative outlets is also lifting. I make jewelry when my hands permit, or paint, or even just mess around with ine of those adult coloring books and colored pencils.
Having a list of ways people can improve their lives and the lives of others even if trapped in bed or on the couch or in pain could be helpful and lend hope. But still, listening is probably a very key thing for people in the worst moments.
Also, having a list of what not to do or say would be good. For example, people who are in too much pain for them to tolerate probably dont need to be told the cliché that no one is given anything that they can’t handle. Instead, the listener could say that they can tell that the person they are talking to is very strong. That the listener can only guess at what they have suffered and that they may not be aware of how strong they are despite how awful this moment must be.
Those kinds of things would be good.
Anyways, this is probably too long. But my feet are burning and it would be nice to help other people… So I kept having ideas and writing about them.
Is that… too ironic?